9 Month Blood Test Results

I was diagnosed with CLL at the end of Oct 2022; it's now July 2023 and I'm trying to get used to these three monthly blood tests...

Last night, as I processed my next set of results, I was trying to figure out what would be better - monthly tests, where I might get de-sensitised to the result roller-coaster... or 6 monthly tests, where I'd only have to deal with the shock twice a year. As it is, mine are three monthly, not regular enough to get used to; not so delayed I get a real reprieve...

So my results... well, as you can probably guess by now, they weren't wonderful, but they're not dire either. My WBC has risen to 193,000 (Lymphocytes 191,000) which is up from 121,000 in April. Normal range is 4-11,000 so I'm well out of the ball park. From what I understand, all this means is that I have a high proliferation rate of the abnormal cancerous cells in my blood.

The good news is that my haemoglobin and platelets are still in the normal range and I'm not experiencing any significant "constitutional" symptoms (night sweats, serious fatigue, weight loss, bruising etc). Also all my genetic marker test results are back and are all currently the lower risk ones - detected 13q14.3, no CD49, mutated IGHV, unmutated TP53/ 17q13.1... which is worth being optimistic about.

My liver function tests are showing some slightly elevated factors, which we'll be keeping an eye on.

So the conundrum continues.

Today, I feel like an absolute anomaly in the CLL world: I have low risk markers, but high proliferation/ aggressive WBC rate; I have high levels of cancerous cells but am experiencing very few physical symptoms of disease progression; it's an older persons disease, but yet I'm young & healthy.... I'm just completely outside the box! (which my friends will probably laugh at because they know this already).

Today, even more than when I wrote my last blog - I really do feel like a lego T-Rex is breathing down my neck... is there really a threat or not?

And so the journey of watch and wait continues - my next progress report will likely be in Nov... until then, may we all be blessed with Courage, Love and Legacy x